Syringomyelia and rehab

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Syringomyelia and rehab

Postby syrinx48 » Sun Oct 13, 2013 6:15 am

Hi all,

As you perhaps know, it has been over almost a year that I went to Germany for Rehabilitation, in a clinic who is specialist in syringomyelia. I want to know if you are interested in my experiences over there, what kind of therapy I got, etc.

I am willing to put it down on paper and tell you about it, but than I want to know if you are interested. I don't want to put much work on paper in vein, when no one wants to read it, or benefit from it.

So let me know and if you are interested I will write it down!

Annemarie
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Re: Syringomyelia and rehab

Postby pmaxwell » Sun Oct 13, 2013 12:02 pm

Annemarie,

I really hope some people will let you know they are interested because I would love to know! Please share.

Patricia
Together We Can...
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Re: Syringomyelia and rehab

Postby sylvester » Mon Oct 14, 2013 12:36 am

I am also interested -- what kind of therapy did you have, what worked, what didn't work, how do you feel after going? Was it worth the trip? Lots of questions. (I hope you don't mind all the questions, with SM one can never have too many answers!)

Anne
" ... always remember: you're braver than you believe, and stronger than you seem, and smarter than you think." said Christopher Robin to Pooh
(SFT 2/10, SM T6-T12 x 4mm, scoliosis, cervical/lumbar DDD, chiari w/low-lying tonsils)
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Re: Syringomyelia and rehab

Postby reedy » Thu Oct 17, 2013 4:20 am

Yes! Very interested!
Remember that on a site like this there are many many people who read but do not post, so you will potentially be helping lots of people.
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Re: Syringomyelia and rehab

Postby JoG » Thu Dec 26, 2013 4:04 am

Hi, I would be very interested in reading about your experiences.
I know I would not be able to do anything like that, but maybe some of
the younger people would benefit from you experience.

I will be 78 in January, so it is a little late for me.

Jo in Delaware
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Re: Syringomyelia and rehab

Postby syrinx48 » Thu Dec 26, 2013 5:14 am

I started writing my experience, but at this moment I do not have acces to my computer. I only have this iPad, but it will surely comes your way!
And especially for you, JoG, I met a woman over there with SM your age!

Annemarie

PS, when it takes too long before I can get to my computer, I try to write it with this iPad.
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Re: Syringomyelia and rehab

Postby JoG » Fri Dec 27, 2013 5:40 am

Thank you Annemarie. I really appreciate you telling me that.
Don't rush, I am a very patient person. Nothing but time on my hands.

I use a laptop computer on a table that slides over my bed and I
have lots of pillows around me.

I use a manual wheelchair downstairs in the kitchen. I have a Jazzy
chair, but don't like to use it. Stubborn old lady who keeps telling myself
that I don't need it. I have a lift to go up and downstairs in this big old
house.
I can still walk some with a walker. But not for long.

Guess I should try to sleep since it is 5:39 AM.

Thanks again for thinking of me.

Jo in Delaware
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Re: Syringomyelia and rehab

Postby taichi » Fri Dec 27, 2013 9:43 am

I would love to hear, we are all looking for something to help.

Barbara
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Re: Syringomyelia and rehab

Postby birdlover3 » Tue Jan 14, 2014 9:46 pm

I too would appreciate it.
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Re: Syringomyelia and rehab

Postby omz » Sun Jul 27, 2014 8:42 pm

I sure would love to know!
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Re: Syringomyelia and rehab

Postby syrinx48 » Mon Jul 28, 2014 3:53 am

Hi all,

I know I promised to put it on paper and let you all know what I have been through and which therapies I got. So as we speak, I am going to rehab again in October until the whole month of November. Then I thought it would be best if I would write a whole new up to dated one.

Also my computer is still broke, the texts I have written on my iPad are not that great. So when I go to Germany the 12th of October I will keep a blog, so you all can read day by day, and asks your questions when you have them on a daily basis. How does that sound?

Annemarie
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Re: Syringomyelia and rehab

Postby marymac » Wed Jul 30, 2014 7:01 pm

Oh yes, please, please: every detail. . . there's no doubt you could help me and many of my SM friends. Thank you Anne Marie. . . and good luck on the next one. Anything you want to share meanwhile, I'll devour!
Smiles & gentle hugs
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: Syringomyelia and rehab

Postby JoG » Tue Aug 05, 2014 2:00 am

Annemarie, good luck to you on your rehab visit. I lurk a lot on here but don't have
much to say.

I would love to read about your experiences and hope it does help you very much.

I go to a pain clinic once a month and that is the same old routine; and the neurologists, just say "there is nothing we can do
for you," sorry. I just love doctors. lol ( my father in law was a doc for 54 years, retiring
at age 79). An old fashioned country doctor who made house calls. He died in 1988.

Again, good luck and I would really love to read about your experience.

Jo in Delaware
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Re: Syringomyelia and rehab

Postby reedy » Wed Aug 06, 2014 6:27 am

Good luck Anne Marie! I hope the rehab helps.
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Re: Syringomyelia and rehab

Postby syrinx48 » Sun Aug 10, 2014 9:03 am

Thank you all for your kind words. I know it won't be going to be easy. I have to leave home for 7 weeks. I know I promised earlier that I would write about my overall experience there. It is a bit difficult when you know there is no internet. I am in the middle of nowhere. But I try to put some words everyday on this board, where you can read and ask me some questions. I know there is 1 computer for all the people staying there, so when I can't write on one day because the computer is busy, I try it the next day. It is a promise! Perhaps some of you may have some questions too. They have once a week a meeting with the CM and SM patients, and they can ask questions to a neurologist. Perhaps I can take some of the questions with me.
So, it is my intention to keep my promise and write about it, but all depends on the capacity of the computer!

Annemarie
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